How to move forward in shared decision-making in pediatric palliative care
child; Palliative Care; Decision Making; article; human; palliative therapy; clinical article; adolescent; therapy; infant; shared decision making; special situation for pharmacovigilance
Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe.
Joren CY; Aris-Meijer JL; Verhagen AAE; Lantos J
Current Problems in Pediatric and Adolescent Health Care
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2024.101569</a>
Shared decision-making in pediatric palliative care in the Netherlands
Netherlands; palliative therapy; shared decision making; advance care planning; article; child; clinical article; Decision Making; diagnosis; evidence based practice; health care personnel; human; Netherlands; Palliative Care
Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care and preferences for future care and treatment. Elucidation of these values and preferences is preferably done early in the disease trajectory via so-called Advance Care Planning (ACP) conversations. In the Netherlands, ACP and SDM are being adopted by most health care professionals. This has happened only recently. Ten years ago, ACP and SDM were unknown concepts for the vast majority of Dutch HCPs. Today, interest in these conversational approaches is booming in both daily practice and in research. This rise has been reinforced by two recent major advancements in Dutch pediatric palliative care: the Individual Care Plan (ICP) and the Dutch Evidence-Based Guideline on Pediatric Palliative Care (DGPPC). Despite this positive evolution, a lot of work is still ahead. ACP and SDM demand a change in mindset from the traditional paternalistic approach by which the HCP 'knows what is best for this child' to a more humble and open approach in which (non-medical) factors that are important to the child and family and may influence the final treatment decision. Such changes in mindset don't happen overnight. In this article we describe the situation of pediatric palliative care in the Netherlands, with focus on the recent evolution of ACP and SDM.
Em M; Cy J; Mc K; Jl A; Aae V
Current Problems in Pediatric and Adolescent Health Care
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cppeds.2023.101549" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101549</a>
Shared decision-making in pediatric palliative care
Parents; End-of-life care; Palliative care; Shared decision-making
Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-centered care, it often uses a SDM approach in clarifying patient and family preferences, goals, and values. This often occurs in an iterative process and across care environments, wherein the patient and family narrative is elaborated. Decisions are then made incorporating both evidence-based medical practice and the unique attributes and considerations of the patient and family.
Stroh JT; Carter BS
Current Problems in Pediatric and Adolescent Health Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cppeds.2023.101551" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101551</a>
Pediatric palliative care in Canada
child; article; human; palliative therapy; government; Canada
Pediatric palliative care (PPC) emerged during the late 20th century in Canada. It has steadily expanded and there are now programs in every province. Programs adhere to recognized standards of practice at both federal and provincial levels. PPC is recognized by government regulatory bodies and professional associations, including the Canadian Paediatric Society.
Marquis MA; Payot A
Current Problems in Pediatric and Adolescent Health Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cppeds.2023.101453" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101453</a>
Pediatric palliative care across continents: Communication and shared-decision-making
Pediatric Palliative; Shared Decision Making
Despite the significant growth and development of pediatric palliative care worldwide, significant challenges remain. One of those challenges is shared decision-making, by which parents, families and professionals all work together to develop a plan of care that reflects both the medical facts and the patient’s family’s values. Shared decision-making about palliative care and about death and dying may mean different things in different cultures and countries. It is therefore important to learn and compare practices around the world.
Joren CY; Aris-Meijer JL; Verhagen AAE; Lantos J
Current Problems in Pediatric and Adolescent Health Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cppeds.2023.101552" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101552</a>
Pediatric palliative care in Sweden
child; diagnosis; article; human; male; palliative therapy; adolescent; therapy; infant; decision making; Sweden; health care facility
In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.
Castor C; Iveus K; Kreicbergs U
Current Problems in Pediatric and Adolescent Health Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cppeds.2023.101455" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101455</a>
Primary palliative care: Skills for all clinicians
advance care plan; American Academy of Pediatrics; end-of-life; goal of care; goals of care; hospice and palliative medicine; palliative care; quality of care
The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all children who would benefit.$^{\textrm{1,2}}$ High quality pediatric palliative care is essential for these children. Collaborative team-based methods focused on improving quality of life have shown to improve outcomes in physical, emotional, and cognitive domains.$^{\textrm{3}}$ Palliative care involvement at the time of diagnosis rather than just at the end of life has moved coordinated care upstream. All clinicians can and should deliver palliative care. The Joint Commission recommends having patient-centered palliative care services available for children, and the Centers for Medicare and Medicaid Services is reimbursing clinicians for this coordinated care. This article details how all pediatric clinicians can positively influence the care of seriously ill children by incorporating palliative care principles into their daily care, resulting in better outcomes for their patients and families. Copyright © 2020 Elsevier Inc.
Sreedhar S S; Kraft C; Friebert S
Current Problems in Pediatric and Adolescent Health Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cppeds.2020.100814" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2020.100814</a>
Pediatric palliative care.
Child; Humans; Professional-Family Relations; Interdisciplinary Communication; Resuscitation Orders; Adaptation; Psychological; patient care team; Psychological; Stress; DNAR; Child welfare; hospice care; Analgesics/tu [Therapeutic Use]; Palliative Care/px [Psychology]; decision making; Pain/dt [Drug Therapy]; Pediatrics/td [Trends]; Quality of Life/px [Psychology]; Analgesics/ae [Adverse Effects]; Constipation/ci [Chemically Induced]; Nausea/ci [Chemically Induced]; Vomiting/ci [Chemically Induced]
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).Copyright 2010 Mosby, Inc. All rights reserved.
2010
Klick JC; Hauer JM
Current Problems In Pediatric And Adolescent Health Care
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.cppeds.2010.05.001" target="_blank" rel="noreferrer">10.1016/j.cppeds.2010.05.001</a>
Food, toys, and love: pediatric palliative care
PedPal Lit; Adolescent Adult Child Child; Non-U.S. Gov't United States; Preschool Cultural DiversityFood Humans Infant Interdisciplinary CommunicationLove Needs Assessment Palliative Care/organization & administrationPediatricsPlay and Playthings Research Support
2005
Sourkes B; Frankel L; Brown M; Contro N; Benitz W; Case C; Good J; Jones L; Komejan J; Modderman-Marshall J; Reichard W; Sentivany-Collins S; Sunde C
Current Problems in Pediatric and Adolescent Health Care
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.cppeds.2005.09.002" target="_blank" rel="noreferrer">10.1016/j.cppeds.2005.09.002</a>